Latest Australian research

Jeong SY, Cleasby P, Ohr SO, Barrett T.

Abstract: Although advance care planning (ACP) has been widely promoted to enhance future provision of end-of-life care, there continues to be a need to better understand the ways in which individuals engage with ACP processes and their perceptions of resultant documentation (e.g. completed advance care directives (ACDs)). The aim of the study was to shed light on the views of patients participating in an RN-led ACP service. Data were collected from 85 completed ACDs and 43 surveys completed by patients and their carers. Diversity was demonstrated across the choice of substitute decision makers, preferred place of care, impact of future limitations, storage and communication of completed documentation. The findings provide clinicians, researchers and policy makers with insights into what matters to people in life and at the very end of life, and how to orientate services towards the preferences for care documented in ACDs. REGISTRATION: The study was retrospectively registered on 8/10/2018 with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246).

Ley Greaves L, Willmott L, Feeney R, White BP.

Abstract: Legalization of voluntary assisted dying (VAD), is increasingly being considered in many countries worldwide. Some regimes have a designated implementation period, after the law has passed but before it comes into force, to develop processes and systems required for VAD to be integrated within existing healthcare. This study is the first qualitative analysis of semi-structured interviews with 31 medical practitioners holding no in-principle objection to VAD, who may go on to provide VAD, during an implementation phase. It looks to understand perspectives on implementation and expectations of participating in VAD. Thematic analysis conceptualized four major themes: a new practice with many unknowns, perspectives on implementation, practicalities of the law, and clinical considerations. Findings highlight appropriate consideration is needed during the implementation phase to prepare the workforce in a sustainable way. Involvement of palliative care physicians in education and support for those involved in all end-of-life care would also be beneficial.

Bakhtary M, Sharma P, Raspin S, Vemuri S, McCarthy M.

Abstract: Children with non-curative brain tumors have a predictable and burdensome neurological decline. Care provision for these children falls in the gap where the acute inpatient services intersect with community-based providers. These children commonly receive care in the community; however, their neurological decline often outpaces engagement with community-based providers. Children with non-curative brain tumors are commonly referred to specialist palliative care services and need timely availability and access to this support. The purpose of this scoping review was to explore the evidence related to standards, guidelines, and models of palliative care provision for children with non-curative brain tumors, and to examine the facilitators and barriers to the implementation of, and access to, these services. Using a narrative synthesis method, a scoping review was conducted according to the Joanna Briggs Institute methodology using six electronic databases (Medline, Embase, Web of Science, Pubmed, CINAHL, and Cochrane Database of Systematic Reviews) from January 2013 to May 2023. A total of 2404 studies were screened for eligibility and 31 were selected for data extraction. There are no international models or standards of care for providing palliative care for children with non-curative brain tumors. Instead, palliative care is delivered at an institutional level, potentially leading to variability in the care that is provided. This variability can threaten the quality of life of these children and their families. Variability in care provision could be minimized by development of standardized palliative care provision. Any proposed standard for palliative care provision for children with non-curative brain tumors should include early integration of palliative care, and allocation of resources to enable training to operationalize referrals to palliative care teams and multidisciplinary care provision across settings, especially home-based care.

Migiddorj B, Batterham M, Win KT.

Background: As machine learning models become increasingly prevalent in palliative care, explainability has become a critical factor in their successful deployment in this sensitive field, where decisions can profoundly impact patient health and quality of life. To address these concerns, Explainable AI (XAI) aims to make complex AI models more understandable and trustworthy.

Objective: This study aims to assess the current state of machine learning models in palliative care, specifically focusing on their compliance with the principles of XAI.

Methods: A comprehensive literature search in four databases was conducted to identify articles on machine learning in palliative care studies published until May 2024, followed by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guideline. The Checklist for Assessment of Medical Artificial Intelligence was used to evaluate the quality of the studies.

Results: Mortality and survival prediction were the primary focus areas in 15 (54%) of the included 28 studies. Regarding data explainability, 20 studies (71%) documented their data preprocessing methods. However, a notable concern is that 45% of the studies did not address handling missing data. Across these studies, 74 machine learning algorithms were employed. Complex models, including Random Forest, Support Vector Machines, Gradient Boosting Machines, and Deep Neural Networks, were predominantly used (64%) due to their high predictive power, achieving AUC values between 0.82 and 0.96. Post-hoc explanation techniques were applied in only 11 studies, using seven different XAI techniques, focusing on global explanations to enhance understanding of model behavior.

Conclusion: Given the critical role of AI-driven decisions in patient care, adopting XAI techniques is essential for fostering trust and usability. Although progress has been made, significant gaps persist. A main challenge remains the trade-off between model performance and interpretability, as highly accurate models often lack the transparency required to build trust in clinical settings. Additionally, complex models frequently provide inadequate explanations for their outputs, lack consistent documentation, and have limited XAI applications, reducing the interpretability of machine learning studies for clinicians and decision-makers.

Sivanathan V, Smallwood N, Zentner D.

Background: Women with chronic heart failure (CHF) experience an increased symptom burden, activity impairment and frailty. Although receiving palliative care services has been shown to improve the quality of life of people with CHF, few patients access this in a timely manner.

Aim: Explore whether there were differences in either referral to specialist palliative care or provision of elements of palliative care to women and men with CHF during their terminal admission in Australia.

Methods: This is a retrospective review of medical records for all admissions resulting in death from chronic heart failure (July 2011 to December 2019).

Results: The cohort (n = 439) was elderly (median age 83.7 years, IQR = 77.6-88.7) and composed of 199 (45.1%) women. There was no association between sex and receiving an inpatient referral to specialist palliative care (P = 0.80). Women were less likely to receive life-sustaining interventions (intubation, inotropes, resuscitation, ICU stay) (odds ratio [OR] = 1.71, 1.04-2.83; P = 0.04) compared to men. Women were more likely to receive terminal symptom-related management (opioids or benzodiazepines) (OR = 3.19, 1.54-6.63; P = 0.01) or a palliative approach (OR = 1.68, 1.14-2.45; P < 0.01). Women were less likely to present to the emergency department (OR = 0.50, 0.31-0.79; P = 0.04) or be referred to an outpatient chronic disease programme (OR = 0.58, 0.34-0.98; P = 0.04) in the 12 months prior to death compared to men.

Conclusion: Given accepted differences in the timeliness of cardiac care for women, the apparent finding of better end-of-life care for women is intriguing and merits further research.